My Ovacome
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Sleepless on steroids and an update!

Sleepless on steroids and an update!

Hi lovely ladies, wishing you all well from my bed here in gloomy Herts. I haven’t posted about myself for ages but still been following and answering when I can. Have to admit I had my head in the sand and didn’t come on so much over the summer while I was treatment free and enjoying the good times!

Anyway, the only reason I am still in bed is I started back on chemo yesterday - 4th line, Cisplatin infusion plus oral etopisode (the scary sounding Rotterdam Regime!) and the steroids plus overactive mind kept me awake literally til 5am so not long awake today. Had forgotten how evil they are!! But so far no sickness so fingers crossed. Has anyone had this regime, would be interested to hear how it went? My onc says he’ll try it for 4 weekly infusions with the tablets and then see how my Ca125 is doing - it was 213 last test 2 weeks ago, highest it’s ever been (it was only 98 when diagnosed over 3 years ago)

Just listening to Gloria Hunniford talking about her daughter Caron Keating who survived breast cancer for 7 years but died aged 42. Very sad but inspiring as she well outlived her original prognosis and her mum and family keep her memory alive with her foundation and the memories of the love they shared. I’m 52 so neither very old nor very young to have OC, I do get days I feel robbed of my future and so weary of being in the treadmill, but also days of immense gratitude for the life i’ve had, my beautiful children now 21 and 19, that I have seen them to adulthood and they will remember me.

Oops, going on a bit, meant to stick to the point will have to blame chemo brain! I was also interested in immunotherapy, particularly Avelumab as I know there have been some hopeful results using this drug for OC in trials but it’s not licensed for it yet. Disappointed to learn trial no longer recruiting in London but anyone know about others coming up?

Better finish there and get myself up! Lots of love and hugs to you all, you are absolutely amazing!

Madeline. Xxx

Ps photo is of me and my daughter at a music festival in the hazy days of summer!

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What a lovely photo. Wishing you well xx

Becky

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What a fabulous picture! Hope you're having a better night tonight. Target Ovarian Cancer have a clinical trials section that may be of use. Hopefully this is a link to the Cancer Research UK page too:- cancerresearchuk.org/about-...

Sandra x

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Thanks Sandra, yes have looked on TOC one, not much that I’m suitable for! But will also look on Cancer research one good idea!

Luckily slept last night so much better today 😘

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Good to hear what you're up to. Those steroid nights are awful, aren't they. Last time around I did something I'd never thought of before: long skype conversations with overseas friends in different time-zones. Transformed a penance into a pleasure! I hope you have some somewhere!

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Good idea if the same this week! Thanks and best to you. Xxx

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The steroids are a killer in themselves ! I get off them as quickly as I can .....The Rotterdam worked for me as my third line of treatment : if you include the six months on the regime , I remained stable for a good year ( six months on , six months off ) bugger reared its head again, and I did cisplatin again , small dose weekly for six months .Gave me another year before immunotherapy trial . I last had chemo August 2015 , and was taken off trial this April . So far , all stable . To be honest , apart from the tiredness , some issues with low potassium / magnesium , and losing hair again , I found it all doable .

I was diagnosed in 2011 .....5 chemos down , trial drug ....and now on watch and wait .

I expect return eventually but meanwhile keep buggering on !

Take the sickness pills religiously , and laxatives to counteract them !

Keep up the music festivals xxx

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Thanks for your reply Angela and your story always motivates me to keep going. What was the immunotherapy drug you were on? My onc doesn’t seem to have that much faith in them up to now but when options are limited . ..

also reassuring to know you found Rotterdam doable as i’d Read some pretty bad things about it! My onc says they have got better at controlling the side effects than when it was first used. How many Cisplatin infusions did you have (if you can remember, I know it all becomes a bit of a blur!!)

We’ll keep buggering on and I shall do the same and yes more music events in the calendar!

Love,

Madeline xx

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fantastic photo....some have done really well on that regime I believe xxxx

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Hi Hertsmum, I saw something about this on the One show. It was sad but her son was on there & he looked like his mum. Gloria Hunniford was clearly proud of her grand son.

I love the photo you look so happy & relaxed.

Steroids do keep you a wake I was told not to take them after 12 noon. I took my first lot at 6am then my second lot at 11am. I also added another sleeping tablet to my other sleepers so I could sleep.

Let's hope this line of treatment will give you a very long remission. Thinking of you take care Cindyxx

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Thank you so much Cindy, yes good advice re timing of steroids! Luckily I slept last night so much brighter today and the sun is out too, yay! Xxxx

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Hi Hertsmum, glad you slept well. Take care Cindyxx

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What a lovely picture.I am in treatment for 2nd reocurence right now.Oh the steroids.Between lack of sleep and weight gain and bowel issues....I cant weight until Im off them.I have a sleeping pill,so I double up on them the night I have to take the steroids..I take the steroids 9:00 in the morning.the day of chemo and two days after.Good luck with your treatment.Lynn 💙💙

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Thanks Lynn, hope you’re treatment goes well, we’ll put up with all this s**t won’t we as long as it does some good!

Sleeping pills don’t seem to agree with me, get weird dreams! But will ask if I can take all the steroids in morning and not st lunchtime as well think that might help. Lots of luck & love

Madeline xx

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Sleeping pills don't agree with me either but I did find that I could tolerate melatonin as it is natural and it helped me some of that may help you on those days. Lots of hugs good thoughts and well wishes sent your way

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Thanks yes that’s a good suggestion xx

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Thank you Becky hope you’re ok? Xx

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Sleepless nights yep I feel your pain.

I used to be terrified of the CA level because it's always been a good indication for me. Now I'm in the it's back won't be NED again camp. Mine was 238 last time down from the highest it's ever been 269 which I thought was 288 need eyes testing lol

I hope the chemo regime goes well. Lots of rest and enjoy being loved

LA xx

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Thanks Lily Anne, yes it’s all part of the fun, Not!

It’s hard knowing we’ll never be NED again but i’m now willing to settle for Stable! It does feel never-ending having one treatment after another but have gradually accepted it’s the way life is now.

Yes i’ll make the most of being loved and looked after! Hope you get your last chemo out of the way without any issues and get to have a break.

Madeline xx

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